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- A person's mental state, personal relationships, or spiritual well-being often change in many ways during or after cancer. Some of these changes can have a life-changing positive side, called psycho-socio-spiritual or PSS Healing. For example, a person may feel mentally stronger or more whole than before their cancer.
- Because researchers are interested in enhancing such experiences in other cancer patients, there is interest in developing a way to measure PSS Healing that would be helpful in understanding this phenomenon.
- To determine and categorize the characteristics of PSS Healing, which could lead to development of a psychometric instrument to measure it.
- Adults who have cancer or have had cancer that was diagnosed after the age of 18 and who have had at least one strong positive emotional or mental change in relation to the cancer (e.g., relationships with others, spiritual well-being or faith, thoughts about the meaning of life, reactions to stress).
- The study design does not involve any treatment or counseling.
- Participants will be interviewed by a research team member. The one-time interview will last up to 2.25 hours and will be audiotaped and transcribed.
- Interviews will consist of an in-depth portion to assess the positive changes in relation to the illness. Participants will then be asked to identify from a list of short descriptions the ones that best reflect their personal experience of PSS Healing.
- Transcribed information will be coded and categorized according to standard research techniques.
Psycho-socio-spiritual healing (PSS Healing) in the context of chronic or life-threatening illness is a patient-reported outcome consisting of growth or benefit in psychological, social and/or spiritual dimensions representing improvement well above the patient's pre-morbidity baseline. This is a far more focused concept of healing than may be found elsewhere in the literature (e.g., Jonas 2004). This positive outcome often occurs despite substantial suffering during the illness, even in terminal cases (Kearney 2000). Qualitative descriptions of PSS Healing in previous phenomenological studies have not been structured in categories suitable for the development a fully validated and standardized psychometric instrument. Also, the relationship of PSS Healing to psychometrically measurable constructs such as posttraumatic growth, resilience, coping, and acceptance is not clear.
Objective: This program is to provide a taxonomy of PSS Healing that is structured in phenomenological categories suitable for the development a psychometric instrument to measure PSS Healing. (Note: this study doesn't target psychotherapeutic or relationship healing.)
Study populations: 30 subjects will be recruited for this research who have experienced (a) cancer, and (b) one or more substantial self-evaluated positive outcomes connected to illness along psychological, social and/or spiritual dimensions.
Design: This protocol of our PSS Healing research program has a qualitative, phenomenological, natural history design - similar to identifying features of a medical syndrome or psychological disorder. Individual subject interview sessions are the data source. Each subject's 2 1/4 hour session will have two distinct interview components: a 1-hour, in-depth phenomenological (natural history: the subject's positive outcomes, how they came about, and the circumstances around those positive outcomes) and 45-minute cognitive interview (how subjects processed healing-related questionnaire items, and their impressions and thoughts about the content area). Analysis of the in-depth phenomenological interview will utilize standard techniques of transcription, coding and categorization of qualitative interview data. External analysts will conduct checks against researcher bias. In the questionnaire-cognitive interview standardized subject-reported outcome measures of psychological, social and spiritual factors will be administered: positive questionnaire items selected from the CaPS (Cancer PROMIS Supplement) item bank of the NIH PROMIS network (Patient-Reported Outcomes Measurement Information System(Trademark)).
Outcome measures: This research protocol is non-interventional: no treatment outcome. This study's output will be (a) a phenomenological model (or taxonomy) of PSS Healing, and (b) an initial assessment of CaPS questionnaire items relevance to PSS Healing (current CaPS questionnaire items were not designed to capture PSS Healing). This research is a first step toward PROMIS-based measures of PSS Healing, and better therapeutic modalities.
Time Perspective: Retrospective
National Institutes of Health Clinical Center, 9000 Rockville Pike
National Institutes of Health Clinical Center (CC)
Published on BioPortfolio: 2014-07-24T14:07:20-0400
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